The Web 2.0-EBM Medicine split. [1] Introduction into a short series.

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Since the three years I’m working as a medical information specialist, I’ve embraced the concept of evidence based medicine or EBM. As a searcher I spend hours if not days to find as much relevant evidence as possible on a particular subject, which others select, appraise and synthesize to a systematic review or an evidence based guideline. I’m convinced that it is important to find the best evidence for any given intervention, diagnosis, prognostic or causal factor.

Why? Because history has shown that despite their expertise and best intentions, doctors don’t always know or feel what’s best for their patients.

An example. For many years corticosteroids had been used to lower intracranial pressure after serious head injury, because steroids reduce the inflammation that causes the brain to swell. However, in the 1990’s, meta-analyses and evidence-based guidelines called the effectiveness of steroids into question. Because of the lack of sufficiently large trials, a large RCT (CRASH) was started. Contrary to all expectations, there was actually an excess of 159 deaths in the steroid group. The overall absolute risk of death in the corticosteroid group was shown to be increased with 2%. This means that the administration of corticosteroids had caused more than 10,000 deaths before the 1990’s.[1,2,3]

Another example. The first Cochrane Systematic Review, shows the results of a systematic review of RCTs of a short, inexpensive course of a corticosteroid given to women about to give birth too early. The diagram below, which is nowadays well known as the logo of the Cochrane Collaboration, clearly shows that antenatal corticosteroids reduce the odds of the babies dying from the complications of immaturity by 30 to 50 per cent (diamond left under). Strikingly, the first of these RCTs showing a positive effect of corticosteroids, was already reported in 1972. By 1991, seven more trials had been reported, and the picture had become still stronger. Because no systematic review of these trials had been published until 1989, most obstetricians had not realized that the treatment was so effective. As a result, 10.000s of premature babies have probably suffered and died unnecessarily. This is just one of many examples of the human costs resulting from failure to perform systematic, up-to-date reviews of RCTs of health care.[4,5]

Less than I year ago I entered the web 2.0-, and (indirectly) medicine 2.0 world, via a library 2.0 course. I loved the tools and I appreciated the approach. Web 2.0 is ‘all about sharing‘ or as Dean Giustini says it: ‘all about people‘. It is very fast and simple. It is easy to keep abreast of new information and to meet new interesting people with good ideas and a lot of knowledge.

I know exactly that most of these web 2.0 tools have been around for quite a long time. Most of these things are not new and regarding the software, there aren’t any differences in most of the cases. But!
These tools and services will help us how to change medicine. In my opinion, the most essential problem of medicine nowadays is the sharing of information. Some months ago, I wrote about a blogger who fights Pompe disease, a rare genetic disorder and he told me about the diagnostic delay. I try to help physicians how they can find information easier and faster. For example: I gave tips how to search for genetic diseases.

Other examples are good functioning and dedicated patient web 2.0 sites, like PatientsLikeMe.

However, the longer I’m involved in web 2.0, the more I feel it conflicts with my job as EBM-librarian. The approach is so much different, other tools are used and other views shared. More and more I find ideas and opinions expressed on blogs that do EBM no justice and that seem to arise out of ignorance and/or prejudice. On the other hand EBM and traditional medicine often are not aware of web 2.0 sources or mistrust them. In science, blogs and wiki’s seldom count, because they express personal views, echo pre-existing data and are superficial.

I’m feeling like I’m in a split, with one leg in EBM and the other in web 2.0. In my view each has got his merits, and these approaches should not oppose each other but should mingle. EBM getting a lower threshold and becoming more digestible and practical, and medicine 2.0 becoming less superficial and more underpinned.

It is my goal to take an upright position, standing on both legs, integrating EBM, medicine 2.0 (as well as medicine 1.0).

As a first step I will discuss some discrepancies between the two views as I encounter it in blogs, in the form of a mini-series: “The Web 2.0-EBM Medicine split”.

Before I do so I will give a short list of what I consider characteristic for each type of medicine, EBM-, Web 1.0 (usual)- and Web 2.0- medicine. Not based on any evidence, only on experience and intuition. I’ve just written down what came to my mind. I would be very interested in your thoughts on this.

Based on your list of characteristics, it’s easy to see why EBM has run into such trouble. Peer review failed, causing objective, transparent, and thorough to fail too. Searching remains crippled by the cost of public access. The result is that centered round the best evidence is often in doubt. Its other characteristics are all negative. Let’s just stop now and try again. EBM 2.0, anyone?

Very insightful post. I agree that integrating EBM and Medicine 2.0 is important and difficult task. When we have both working together, the people and patient centered conversations in Medicine and Health 2.0 will no longer be limited to personal stories and anecdotes but will become data-centric repositories of personalized medical information and learning.

Very interesting post. I am not sure I agree that EBM is transparent. In my experience practitioners choose the research that suits their particular position, and decision-making can only be as good as the research it is based on. I believe web 2.0 makes EBM a lot more transparent than it currently is and I welcome the collaborative and open aspects of web 2.0 into health care practice. Thanks.

I’m intrigued too! Thank you for starting the posts. I have not seen a conflict, maybe because I am learning about web 2.0 tools. To my mind, web 2.0 might highlight where there are pratcical gaps in EBM. Even better it might facilitate ways that we can organise research better to help solve these problems.

Nice comparision. As the Founder of Tx Xchange, http://www.txxchange.com, patient relationship management (PRM) software for the rehab industry, I experience the conflict between EBM and Web 2.0 on a consistent basis.

We’re Web 2.0 leaning, but working to integrate EBP. A balance can be found.

Thank you all for your thoughts and input. I didn’t expect to stir up so much discussion by a simple meandering.
You brought up so many points, I think I need to address them in a separate post.

In my view bringing in a little more web 2.0 in EBM is easy, but really integrating the two will be far more difficult because the inherent differences.
The first thing that has to be done is to get a clear view of what web 2.0 and EBM exactly stand for. There is a lot of prejudice about the two.

As planned my first one or two posts will be about the often wrong interpretation of EBM -by medicine 2.0 and medicine 1.0 sources/people (see Ravi’s remark). An important next step is to find out why there are practical gaps in EBM, as Anne Marie puts it: why does EBM seemingly fails? Is it too time-consuming (dr. Shock) or not really transparant (anon, sarah), or not always practical? I would like to hear your thoughts about that. I think it would be good to go into the limitations of web 2.0 as well. And then the integration, EBM2.0, what can we achieve, how should it be done?

Did I miss something? Do you have examples yourselves, thoughts? Please let me know.
Love the discussion, Jacqueline.

Perhaps Web 2.0 and EBM will combine in the near future to become EBM 3.0

Where patient stories provide objective evidence. Our evidence can become more precise with more information. For example, in your intracrnial pressure example, we will be able to better distinguish the different types of pressures and provide the right treatment in the right case, all based on the collective knowledge of web 2.0.

Laika,
Thanks for a great discussion of these factors, which health science librarians struggle with when answering reference queries. An interesting reference question I had recently was from a third year medical student who wanted to know which source would provide her with “all the standards of care” she needed during her clinical clerkship.

This is a difficult source to point to – as “it” doesn’t exist in one place (i.e. Medline, Cochrane Library, Scopus, Up to Date, etc) nor would there be complete (or enduring) consensus on such clinical guidelines or standards among physicians at different levels of clinical experience (or even from hospital to hospital, or country). Hers was a question I could not answer fully.

I recommended that she look at http://guidelines.gov, professional societies such as American College of Cardiology or American Heart Association, etc. and do a thorough search on Medline.

However, she is an American. Those from Canada, Netherlands, UK or anywhere else would be looking at different sources for similar (but not the same) standards.

To hand her one URL to locate universal standards of clinical practice for (example) inoperable pancreatic cancer? That I (and many of us!) would love to get our hands on such a source.

Well lets first wait till there is a web 3.0 and EBM and web 2.0 mingle insofar as this is possible.
I do not believe that patient stories can provide objective evidence that is as rigid as the evidence obtained from good clinical trials, except for instance in case of adverse effects which appear to have an obvious cause (see for instance my post http://is.gd/4DGK and the post of Dr Val “Consumer-Generated Clinical Trials? Research Minus Science = Gossip” http://is.gd/anlL). I do believe however, in a patient-centered approach.
In the intracranial example it is already evident that there is no benefit. Why test any further individuals to find out if a specific condition would make any difference? Of note, lowering the intracranial pressure by corticosteroids did not prevent mortality.In other words, beware of surrogate markers.

@Creaky
You raise an important issue: “Why isn’t there ONE guideline on a particular subject?” Recommendations may always differ per country and even per specialty, but the evidence itself may not (only whether it is applicable may be dependent on other factors). Therefore, there should be one basic guideline containing all the evidence and this should be freely available. A kind of basic ‘fact’book.

Although Dutch, I do search http://www.guideline.gov and other English language databases. In fact we nearly always start with searching for aggregate evidence.Not to blindly follow the protocol, but to find the evidence there is and look whether it is applicable.

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